Coming to terms with such a disease - CIDP

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Hi fellow CIDP's and supporters. Well it has taken over 14+ months for me to begin to accept that I have CIDP and Sarcoidisis (Both immune disorders). After many IVIG, drugs and MORE drugs, the fatigue, feeling so sick, my doctors have told me it is progressing (though slowly :-) up my legs and now pins and needles in my hands and at this stage cannot controll the progression. The reason for saying all this is simply to 'Vent' my anger, fustrustration and saddness that I am putting my family under. This disease is invisable, only the person with CIDP can feel the PAIN all day, every day. For other people to understand.....well it's hard, though they also feel our pain.

BUT I am slowly coming to terms with this. Being positive is hard, I know (I TRULLY KNOW), but as with many of you I have changed my diet, trying to excersize and remain happy for my wife and childern.

I am not sure what the years ahead will bring me....will they find a cure???....will they have a drug to stop the pain, but not change your mood??? no-one knows. Will I be able play with my grand childern??

What I do know is if we (ALL OF US) can stick together and sometimes just 'speak out' on how we are feeling....well no harm in that.

As one of my many doctors told me last week "I am so sorry Michael, but it is a disgusting disease". This was a 'bad day' for me!

I am asked and I also ask "WHY?", don't smoke, don't drink, no drugs, so what did I or you / we deserve to get this. Again I do not have the answer, but I leave you with this message.

Sufferers, Survivors and Supporters of CIDP are in this together and need to understand each other, support and make each other smile once in a while.

Feel free to contact me at anytime as I like you need as much support and to try to undersatnd this disease a little more.

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Welcome, Michael, and I hope you make a lot of new friends here. This is a terrific community. For your security, I removed your email address, for though we try our very best, the occasional spammer drops in. But if anyone would like to chat with you, they can send you a friend request, and message you here on the site once you have accepted it. All the best to you!

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Ask your doctors about receiving Rituxan for treatment. It could possibly help stop and reverse progression.

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Michael, I understand your pain, frustration and sadness. It is very prevalent in my life as well. I have been diagnosed with CIDP since 2012. It was so hard for me to accept that this is my life now. I was a nurse before now I am the patient. Have you looked into the Stem cell transplant out of northwestern by Dr. Burt? I have heard alot of people have had success with it. I am on IVIG weekly plus many medications but I relearned to walk with arm crutches. I am not sure I am ready to take that next step towards the transplant. There are 2 groups on facebook that I would highly recommend you join for support. They are a great group of other cidpers (if that is a word). They are GIBS/CIDP exercise group and living with CIDP. They have been awesome to know there are other people out there who know exactly what I have been through and am going thru daily. Hope to see you there

Kim

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Just to say welcome Michael :)

I am also fairly new to all of this, only diagnosed last year, still early days for me, but it Does hit me at times and those times Do seem to be increasing.

We can All understand your anger, frustration, sorrow etc, one great thing here is that there is akways someone researching and willing to share their findings, as you see above mate :)

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i feel your pain literally. all the same symptoms. take this with you for today, yes you can play with the grankids, you just have to modify what you do. mine are still little but they love coming to Grandmas. lots of puzzles, books movies. not a lot of physicality just a lot of fun together

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Six years this month. When it comes to this illness, I haven't come to terms. Doctors and therapists said I would in time but I never will. I hate it, fight it and defy it. I try to separate the it from me. It's hard because they say the enemy is autoimmune, meaning self. I would never do this to myself. I haven't even accepted the autoimmune. I am determined to know the causes of demyelination, and have found a few. Felt good to let that out...

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Yes I do understand the wish for a drug that would ease the pain and not the mood but you gotta play with the hand god gave you

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Hi Michael my name is Tess and I to have CIDP and have had many of the same issues and experience the symptoms again in the flare ups. However, I wanted to share some hopeful news. When I was diagnosed I had lost all reflexes except for one, I couldn't feel my legs below my knees only the pins and needles and the feeling in my arms up to the elbows.

I couldn't stand the pain, the pins and needles, not feeling the floor or having anyone NOT listen any longer. Finally I got my neuro to listen because I almost fell into a fruit stand in the store because my ankle went out and as I said to her I am 5'7" not skinny and IT DIDN'T HURT. So after testing....etc.....CIDP was the result.

I had a very hard time with IVIG, I always had several problems with it but that is for another day and like you I couldn't be happy I didn't know where to turn etc.

So I sd to the dr the one med you have me on says may cause depression please give me the meds for depression and she did. Then I said to myself now that we can manange that issue it is time to stop listenening to the drs and what I can't do and what my body was and wasn't doing and take the bull by the horrns.

So when I was in the hospital for my first round of IVIG they gave me exercises to get my strenght back in my legs and help with my balance. If you don't have these maybe you can get a pt and they can give you some. I did these as many times as I could and as often as I could despite the pain etc.

But after a while I started to get stronger! I couldn't believe it! I started to feel better and could once again declare I actually was human! Lol

I eventually got my reflexes back (not everyone may get them all back but I was lucky) and eventually the feeling in my feet, legs, arms, and hands etc. came back to.

I to have changed my diet because now I am gluten intolerant, found I have arthritis and problems with tendonitis which I am told is related somehow to CIDP and a few other issues related to it.

BUT I am doing great compared to where I was. I also said something very important to myself. There are several people worse off then myself many of them veterans ( I am a huge supporter of the veterans by the way so please don't misinterperet my last statement) who have problems worse then I have and are doing better than me and if they can come back so can I!

But I also learned to find humor in myself and the ugly mess called CIDP. Since no case is the same I figured no one could tell me I wasn't going to accomlish this or that. Just keep in mind goals can be set and it will take forever to get there BUT WE WILL GET THERE!!! One way or another.

I know it is hard to see your family look at you this way and your friends but as they see you fighting the best way you can they help you fight in their own way. Sometimes you will need their help and sometimes you won't. Sometimes you will be king of the mountain and sometimes you'll be sitting at the bottom of the mountain getting ready to climb it.

But don't give up on yourself, family or friends and let everyone in - in the way you and they are most comfortable. It takes ahwile to figure it out but you will. I did alot of research, crying ( I still do) I got angry ( still do), I did alot of crying (still do) oh yea I already said that.

Remember IT IS ALSO OK TO TALK ABOUT IT!!! If you need someone to talk to and I can help you please let me know.

Good luck and feel better soon!

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It is great to just talk about how we feel. it would be great to set up a support group like this in Australia, queensland. Maybe dancermom can contact me to assist?

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Did someone call my name? Hi, Michael, I just formed a subgroup for Aussie/NZ CIDP. Just click on Groups to find it. I will hunt around for a suitable picture. If you like you can post a discussion from there called "Who is from Queensland?" or something. :)

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Maybe someone should do a “meeting” online with skype or some other web cam app. Everyone could meet and share experiences and anything that could help.

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I probably shouldn't say this... But I don't think I will ever come to term with this disease. Had it since 2009. I try to tell myself that I am on a new journey in life. That helps me cope. But I certainly do not see myself coming to terms with a disease that I still don't know for sure how I got it, what caused it, and whether or not it will kill me one day. A part of me has already died from it. That is all I know for sure. I will never be the same as I was before.

I have heard so many who say, What does it matter? It is what it is. I wish I could have that attitude. I don't. Wondering for sure what has caused this disease. How can I protect my loved ones from it without knowing? But it isn't just that, either... I don't feel like I want to know... I feel that I need to know. I don't think I will ever stop researching. I will never stop wondering... I do not let it consume me, or my life. But I can't let it lay to rest, either.

Living in Northeast Michigan, leaves me hours from any support. There is absolutely nobody in my area that has even heard of such a crazy disease- not even the nurses of doctors. Went to so many ER Departments, tripping and falling, and they would send me away, like I was a drunk when I hadn't had a drop. I would try to tell them, I wasn't drunk. I needed help. Well, yeah... I have a different perspective of the health industry than ever before. Anyway, back on subject- If it hadn't been for the support I found from the internet, I don't know how I could have gotten through so much. I am so thankful to the groups I am on.

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Michael, I sometimes freak out in my head because of the lack of control.. But I am trying to look at this as a new stage in my life. which stinks at 44 years old!! I was working full time with a great salary... Now Im not... Trying to get on disability is very frustrating... But I have more time for my children and looking at it as a BLESSING for THAT reason.... Its hard because family will never truly understand our physical symptoms... My husband says "oh you are fine" often... I try not to complain or get frustrated with the comments... I love to exercise and I love the sun... But both make my symptoms worse... Again...I am trying to stay positive with what I DO have and Slowing down my life a bit to truly enjoy my family!!! My kids are so happy to have me with them!!! We went to Florida a few months ago... I could not walk on the beach with them... I just sat down in the spot I was in and enjoyed the moment... If thats all I could do I was fine with it... I am trying not to worry my kids rather explain these physical symptoms are ok... doesnt change who I am!!! I remember a patient I was treating years ago with MS... He fell as he was walking into our physical therapy center... Just the way I did a few months back..straight on my face!!... But he had such a positive attitude about it! Remebering him gives me strength on who I want to be!!

Michael good luck with your journey!!! Stay Strong!! :)

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hi coming to terms with cidp Today that is a laugh. I have had this disease over 9 years and I thought I had come to terms with it a long time ago. That has changed. Throw in congestive heart disease, COPD, high blood pressure, swallowing problems and old age .Now I am alone in caring for myself. My care giver died. She was only 53. I am 83. CIDP is insidious. Every week one day is consumed by infusion. One day is feeling tired from the IVIG and solu-medro. and the day before infusion, the pain that is slowly progressing up the legs and arms. Then throw in the fact that My condition is such that to do any invasive procedures to treat any of my diseases would be more dangerous than just living with what I have. Because of my age I am being written off.

Before I was written off, I looked for answers, I exercised, I had a strong outlook on life. Now I have this battle to fight to find a way to live with what I have I could live another 20 years, To everyone out there reading this. Don't give up. I haven't.

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Hey Michael,
Glad to have you here. Hope you get something out of the great folks here.

IVIG works for many, but not all ~ including me. If your neurologists are not actively trying other things,particularly Plasma Pheresis, to stop the demyelenation, I'd strongly urge you to find another one.

Many (most?) of us probably end up with some degree of irreversible axon damage. That's just the way it is. However, if your condition is worsening, if the demyelenation is ongoing, they need to get more aggressive.

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Ethel said:

hi coming to terms with cidp Today that is a laugh. I have had this disease over 9 years and I thought I had come to terms with it a long time ago. That has changed. Throw in congestive heart disease, COPD, high blood pressure, swallowing problems and old age .Now I am alone in caring for myself. My care giver died. She was only 53. I am 83. CIDP is insidious. Every week one day is consumed by infusion. One day is feeling tired from the IVIG and solu-medro. and the day before infusion, the pain that is slowly progressing up the legs and arms. Then throw in the fact that My condition is such that to do any invasive procedures to treat any of my diseases would be more dangerous than just living with what I have. Because of my age I am being written off.Before I was written off, I looked for answers, I exercised, I had a strong outlook on life. Now I have this battle to fight to find a way to live with what I have I could live another 20 years, To everyone out there reading this. Don't give up. I haven't.

MY INSURANCE WILL NOT PAY FOR ANYTHING THAT IS NOT COVERED BY MEDICARE.t THAT IS MY PROBLEM. AND My age is against me.

I HAVE BEEN AGGRESSIVE. I AM A FIRM BELIEVER IN CONTROLLING YOUR BODY'S CARE

I ASKED FOR STEM CELL. I ASKED FOR PLASMA PHERESIS. I TURNED DOWN THE DRUGS THAT MIGHT CAUSE A BRAIN CANCER EACH SOLUTION HAS BEEN TURNED DOWN FOR ME

I READ WHERE SOMEONE HAS 0.5 GM INCREASE IN THE AMOUNT USED BUT I DO NOT QUALIFY FOR THAT INCREASE.

I HAVE 5 DOCTORS WHO HAVE SAID THAT MY CONDITION DOES NOT WARRANT ANY INVASIVE PROCEDURES.

I HAVE IRREVERSIBLE DAMAGE. BUT FOR ALL THE YEARS THAT I HAVE BEEN LOOKING FOR ANSWERS I HAVE NOT BEEN ALLOWED TO FIND THE ANSWERS.

EACH INDIVIDUAL IS TREATED DIFFERENTLY

I SPENT YEARS LOOKING FOR A SUPPORT GROUP. THERE WAS NO ANSWER AS TO WHERE TO FIND ONE. EVEN THE GROUP IN PHILADELPHIA COULD NOT PROVIDE ME WITH ONE, IT WAS ONLY BY CHANCE THAT I FOUND THIS GROUP. .